Frequently Asked Questions

PalliAtlas is a free, map-based platform designed to help patients, families, and care providers quickly find hospice agencies that serve their location and needs. While most directories rely on ZIP code lists, PalliAtlas gives a clearer picture by showing agency service areas on a map that can be adjusted by the hospice, so you can see at a glance who comes to your home. Unfortunately, about 85% of hospices are in urban settings, which means the rural parts of our country are woefully underserved. As a doctor working in hospice in a rural state, I can tell you firsthand it can be difficult to find an agency that covers outlying areas. As a result, we offer map-based displays of hospice agencies, some of whom have confirmed their coverage area by editing their coverage area on the map as well as the services they offer. You can filter by key features like pediatric care, complementary therapies, medical aid in dying participation, and nonprofit status among these agencies to find the one that offers the kind of care you find most important. We also help you directly contact the agency so you can ask for either an “informational” or a “referral.” An “informational” allows you to chat about hospice in general as well as that particular agency to learn more about the program and what they offer. A “referral” describes the process of enrolling yourself or your loved one with a hospice agency. We’re building this to bring more clarity, transparency, and ease to one of the hardest times in people’s lives.

I’m a board-certified physician who practices palliative medicine in the hospital and in a clinic. I’m also a hospice doctor. Every day, I have conversations with patients and families who are struggling to understand what end-of-life care looks like. We spend a lot of time navigating misconceptions, negative prior experiences, and questions about what the future may hold. Making the decision to enroll in hospice care is hard enough, but it gets even harder when it comes time to select an agency. Because of hospital policies and Medicare rules, it’s often very difficult for those of us who work in hospitals and clinics to recommend a particular agency, even if we know provide excellent care. PalliAtlas™ fills that gap. It gives patients and their families the tool to easily find high-quality hospice agencies that serve their home and provide the services they need. Primarily, we offer map-based displays of hospice agencies, some of whom have confirmed their coverage area by editing their coverage area on the map as well as the services they offer. You can filter among these agencies to find the agency that offers the kind of care you find most important. We also help you directly contact the agency for either an “informational” or a “referral.” An “informational” allows you to chat about hospice in general as well as that particular agency to learn more about the program and what they offer. A “referral” describes the process of enrolling yourself or your loved one with a hospice agency.

Our mission is to empower patients, families, and clinicians with clear, accessible tools to find high-quality hospice care that meets each patient’s needs: at home, at a vulnerable time, and without confusion. By bridging the gap between hospital-based care and community-based services, PalliAtlas™ helps ensure that no one has to make this decision alone.

This question is asked a lot and is probably the #1 question on generic FAQs on websites. Palliative care is a new field of medicine. Many of us will tell you that we focus on whole-person care and treating suffering in patients with life-threatening illness, but what does that actually mean? What does that look like? It often means managing symptoms such as shortness of breath, depression, or pain with medications, complementary therapies, and other approaches. But we also recognize that suffering is bigger than just physical discomfort; it also includes social concerns, spiritual worries, and psychological burdens. We treat all of that too. Palliative care can start at any point in the process of being diagnosed with a serious disease – we usually prefer being involved sooner rather than later. You can receive palliative care as you undergo treatment for cancer, heart failure, kidney failure, or any other medical issue. You don’t have to stop chemotherapy, radiation, medications, or turn down surgery if you want palliative care. We stand alongside you on your health journey.

Palliative care is delivered by a clinician, usually a doctor or advance practice provider (like a physician assistant or nurse practitioner). Doctors must do an extra year of training after their residency training to be board certified in palliative care – that’s called a fellowship. Fellowship training and board certification is generally considered the “gold standard” for physicians. Palliative care is usually delivered in the hospital or in clinics. We sometimes see patients very frequently, like every few weeks, if we’re helping with difficult symptoms. We may see patients every few months when we’re more focused on discussing health trajectories and planning for the future.

This question is asked a lot and is plagued by misinformation. Hospice is a specific program that is supported by the government, through the Centers for Medicare and Medicaid Services (CMS). It is designed for patients who have a serious illness and are expected to live six months or less if the illness follows its usual course. To enroll in hospice, patients typically stop treatments intended only to cure disease and instead focus on comfort, symptom relief, and quality of life. Hospice care is delivered by an agency which must meet certain requirements by CMS in order to be reimbursed for the work they do. There are almost 6,000 hospice agencies in the country, with the vast majority in urban areas. The care is usually provided in-home, with a core team of nurses, physicians, social workers, and chaplains coming to your home to provide whole-person care. Whole-person care means not just symptom management, but addressing the emotional, spiritual, and psychological distress some patients face at the end of life. Hospice is almost always covered by insurance without a copay or subscription fee. Importantly, hospice is very common; around 50% of all Americans on Medicare pass away with the assistance of hospice, according to the National Hospice and Palliative Care Organization. Family or friends are expected to be the main caregiver for patients on hospice, with the hospice agency acting as a layer of support for patient and caregiver on top of that. Most hospice care takes place in the home, but can also be delivered in a facility, hospice house, or occasionally the hospital.

Palliative care, on the other hand, is much broader. It can be provided at any stage of a serious illness — not just at the end of life — and can be provided alongside treatments aimed at curing the illness. Palliative care focuses on managing symptoms, supporting families, and helping patients navigate difficult decisions, regardless of prognosis. There are no requirements to stop life-prolonging treatments, such as chemotherapy, while receiving palliative care.

In short:

• Hospice is a subtype of palliative care provided near the end of life, typically covered by Medicare, Medicaid, or private insurance.
• Palliative care is available at any stage of a serious illness and is not limited to those nearing the end of life. This is almost always covered by insurance.

In order to qualify for the very broad and comprehensive benefits of hospice, the government expects patients to stop therapies that are intended only to prolong life. This is a difficult trade-off for many patients, but in reality is not as bad as it sounds. When patients with serious disease are getting closer to the end of life, things like chemotherapy don’t help as much as they did before and may even harm them. The same can be true of treatments like immunotherapy. For some diseases, like dementia, there aren’t really life-prolonging medications to stop. For other disease, like end-stage kidney or heart failure, continuing most of the medications you were on before makes sense to keep symptoms under control. Some medications are stopped after enrolling in hospice because the patient may not be expected to live long enough to see a benefit. For example, statin medications to lower cholesterol will maybe reduce your chance of a heart attack a few years from now. Continuing a statin while on hospice may not make sense given it takes a few years to see benefits.

One of the saddest things I see in my hospice practice is that patients and families often regret not enrolling sooner in hospice. The comprehensive and whole-person care that our loved ones receive in hospice is very unique and not commonly seen in other areas of medicine. Data from the National Hospice and Palliative Care Organization (NHPCO) has shown us that the median length of stay in hospice is 18 days, and it’s been that way for years. That’s an awfully short period of time for the hospice to do their best in ensuring you receive care to improve your physical, emotional, and spiritual quality of life. However, it’s understandable that from a patient’s viewpoint, it can be hard to know when it’s the best time to start considering hospice. For one, you can always ask your clinician or care provider, “do you think it’s time to consider hospice?” Sometimes, clinicians are uncomfortable to bring up the topic of hospice despite feeling it might be time to start considering it. The opinion of a trusted clinician is usually a good place to start. In general, however, decline in health and independence over the past 6-12 months despite medical treatment for a serious underlying disease should prompt the consideration of hospice. Other things to consider include increased time spent sleeping (>12 hours per day), unintentional weight loss, spending more than half of the day sitting down or in bed, and increasing need for help with daily activities (like bathing, eating, or using the toilet). Increasingly frequent trips to the emergency department and/or admission to the hospital are another trigger to consider if it’s time for hospice care. If you’re not sure and are afraid to ask your clinician, you can also reach out to our team at PalliAtlas for guidance.

Once you’ve decided that you’re interested in hospice, we would recommend you use PalliAtlas and your clinician’s input to pick 2-3 agencies to consider. Please be aware that government rules mandate that you have freedom of choice when picking an agency, so the hospital can’t tell you that you only have one option. Once you’ve settled on a few options, reach out to them by phone or email to schedule an, “informational.” This is an opportunity for a hospice agency to tell you about themselves and the services they provide, as well as for you to ask any questions you may have. Once you’ve spoken with your options and have chosen the one that is the best fit for you, you can let them know that you’re ready to ‘enroll’, which is the term we use for signing onto hospice. The hospice will need to verify that you or your loved one meet the criteria of the program. They are often able to get records electronically or from your primary clinician, but you may be asked to provide records or consent forms. Once the medical director has confirmed you or your loved one meets criteria, some paperwork needs to be signed. After that, and typically within hours to a few days, the hospice will deliver equipment and medications to the home, nursing facility, or other location where the patient will be receiving hospice care.

Every patient is unique, so everyone’s needs may vary. The perfect agency for one person may be a bad fit for another person. Some things I usually counsel patients to ask about is the frequency of nursing and health aide visits, if the hospice physician sees patients at home, and if their medical director is board certified and lives locally. Non-profit vs. for-profit status is something to consider, but doesn’t always correlate with quality of care. Around 75% of all hospices are for-profit, for example. Medicare’s Care Compare website has hospice ratings derived from surveys sent to families along with some other information that is sometimes helpful to families seeking an agency.

Yes. You have the legal right under Medicare rules to change hospice agencies if you feel another program may be a better fit. The process is simple: once you choose a new hospice, you’ll sign a transfer form, and the new agency will coordinate with the old one so your care continues without interruption.

Hospice is a service, not a place. Care usually happens wherever you live; most often at home, but sometimes in a facility or dedicated hospice house. Nurses must visit at least once every 14 days (by Medicare rules), though most agencies visit weekly or more frequently. Aides to help with things like bathing often visit several times per week, and the team can adjust visit frequency if your needs change. Hospice is also available 24/7 by phone, with a nurse able to come out day or night if needed. Most patients are used to the classic model in medicine, where you go to the doctor in their clinic or hospital. Hospice is the opposite; the clinical staff, medications, and equipment come to the patient, wherever they’re at. The social worker and chaplain will often visit once initially and then as needed after that, but this can vary substantially. The doctor isn’t required to visit and usually manages things from afar through conversation with the staff, but many hospices have their doctor visit patients initially and then as needed after that. Hospice is always available 24/7 by phone and if needed, a nurse can make a visit in the middle of the night. When you enroll in hospice, your point of contact for emergencies becomes the hospice team, not 911. The important thing to remember is that hospice is flexible; if the patient’s symptoms are difficult to control or their needs have increased, hospice will adapt to their patient’s needs and come more frequently. Some patients with challenging symptoms may have daily visits until things get under control. Hospice is all about what the patient needs.

Everything related to your ‘primary diagnosis’ should be paid for by the hospice agency. When someone is admitted to hospice, they have what’s called a ‘primary diagnosis.’ That’s the main reason they’re on hospice – imagine something like ‘lung cancer’ or ‘Alzheimer disease.’ All of the care related to that diagnosis – medications, doctor visits, everything - must be paid for by the hospice. Using the example of lung cancer, that means the hospice coordinates and pays for your oxygen at home, the visits from the hospice team, your medications for pain and shortness of breath, and even things like radiation therapy for a metastasis causing pain. Things that are not related to that primary issue, like your high blood pressure or thyroid medicine, can still be billed to your regular insurance. Hospice care generally has no copay or deductible, although individual insurances can vary. The hospice will often have your medications delivered to your home, again with no copay. The assistance of the social worker, chaplain, dietitian, and even respiratory therapy (if needed) are free to the patient, if needed. Many hospices offer other complementary treatments, such as music or massage therapy, which are usually free of charge or low-cost. Importantly, hospice provides equipment the patient will need, so will provide the oxygen, hospital bed, walker, shower chair, bedside commode, and the list goes on. They will also provide things like diapers and wipes needed if patients develop incontinence. It’s really astounding how much they provide!

Generally, the answer will be no. There are some nuanced exceptions to this: if your main clinician really wants to be your primary provider while on hospice, ask your agency if they can make that person your, “attending physician.” You may continue to see any clinician providing care for you that is not related to the reason you’re on hospice. For example, you can continue to see your podiatrist while enrolled in hospice for lung cancer. You can usually bill insurance for those visits too! However in most cases, the hospice medical director or physician will step in as your new primary care doctor. This doesn’t mean you can’t update your oncologist or other specialist as time goes on. As doctors, we want to know what happens to our patients after they leave our care to enroll in hospice.

Every hospice is required to have a medical director who verifies a patient’s prognosis, eligibility for hospice, and forms the medical plan for each patient. They also can go see patients when they’re having challenging symptoms or difficult decisions to make. The medical director is required to be a physician, and any physician can take on that role. It is not required to do a fellowship in hospice & palliative medicine to be a hospice medical director, nor is it even the most common path. Many physicians are competent, caring, and thoughtful hospice medical directors without having done special training in this field. Fellowship training and/or board certification, along with the Hospice Medical Director Certification Board (HMDCB) examination, are two pathways for physicians to deepen their training and capacity to do this job. Many larger hospices will employ extra physicians to see patients and assist in enrolling them in hospice, but there is only ever one medical director per agency.

Absolutely. You are never prevented from doing what you feel is best for yourself or loved one. We generally try to educate patients to call hospice before 911 if you feel an emergency has arisen. You can leave hospice at any time by simply letting them know you would like to ‘revoke’ hospice and then signing some paperwork. Many hospice patients end up in the emergency department at some point during their stay for a variety of reasons, and in many cases they simply return home after to resume receiving hospice care. A common misconception is that if you have a minor medical issue, such as cutting yourself while cooking, a urinary tract infection, or fall and break your wrist, that hospice won’t do anything about it. It’s quite the opposite; you can go to urgent care for stitches, receive oral antibiotics, and even get X-rays and a splint if needed. The overall philosophy of care is to help you live the best life you can, knowing we can’t fix your underlying serious medical condition. There isn’t much sense to leave your wrist broken if you’re otherwise enjoying your time with family and your hobbies. Many hospices are even able to do X-rays in the home or arrange paracenteses with a local physician. Be sure to share your concerns with your hospice agency to hear their experience in dealing with these issues in the past.

In general, hospice agencies don’t provide housing and unfortunately, hospice does not provide 24/7 bedside care in the home. While the nursing and aide visits can be frequent, it is almost never enough to cover the simple personal caregiving needs of a patient on hospice. Hospice is available on call 24/7 for symptom needs and other issues, but not for simple things such as needing help to get to the toilet. The general expectation is that the patient is strong enough to do things like prepare and eat their own food, bathe, and get to and from the toilet independently, OR they have family or friends living with them or nearby who can help with those tasks 24/7. Some patients with the financial resources will hire personal caregivers to help with these tasks, but this can be costly. In other cases, moving into an assisted living or long-term care facility is the only option, but this can also be a large expense. Hospice houses are occasionally an option for patients. These are sometimes owned by a hospice agency for their own patients, but other times are operated by a private group or charity. They are typically non-profit but may sometimes ask for family to pay for the cost of room-and-board. Usually they will provide the housing and 24/7 care side for the patient, while the hospice agency will then provide the hospice care for them in the house. PalliAtlas lets you search by agencies that have their own hospice house, if they agency has shared that information with us. In some specific situations, insurance may cover the cost of a nursing facility for the patient to live in while receiving hospice care. If you think you may need this, we would recommend you speak with the hospital social worker if you or your loved one is currently inpatient, otherwise reach out to a local hospice you’re interested in to see if their social worker could help navigate that decision.

Sometimes, if a patient is having symptoms that are so severe they can’t be controlled adequately at home or in their facility, we can admit them to an inpatient hospice unit. This is uncommon and is not the same as receiving hospice care while living in a facility. Unfortunately, the government rules around hospice don’t allow us to admit hospice patients to inpatient hospice because they need help with personal care.

Hospice will provide an extra layer of support on top of your caregiving, with the weekly visits from nurses and the hospice aides to help out. Hospice does offer respite care, which describes when the agency can house your loved one in a facility or hospital for up to five days at a time to give you a break from caregiving. You can use that time to simply take a break, go on vacation, or attend an important event. Respite care is intended, however, to be a short pause from the ongoing responsibility of caregiving.

Nothing happens after six months! Many people enjoy the benefits of hospice care for longer than six months. We love being wrong when trying to determine a patient’s prognosis. Jimmy Carter was on hospice for 22 months, and there is no problem with that. If a patient continues to show evidence of decline, we can continue recertifying them for hospice care. As you progress past six months, you will have an in-person visit from a physician or nurse practitioner every 60 days to ensure you still meet criteria for the program. Occasionally, patients get better while on hospice care and no longer qualify for the program. In those situations, the patient “graduates” from hospice and can go back to receiving typical medical care. That transition can be hard, as the patient often loses access to the broad degree of support they were previously receiving from hospice.

Yes. Pediatric hospice is an incredible support to parents and children going through their journey with serious illness. Specialty pediatric hospices are rare and usually affiliated with children’s hospitals in big cities. Families in smaller cities and rural areas may not have access to specialty pediatric hospice care, which is deeply unfortunate. Some options for those families are to seek out pediatric palliative care in their main children’s hospital for advice and guidance in this scenario, or to discuss with a local hospice agency if they feel comfortable admitting a child. There is no rule that a hospice agency that primarily serves adults can’t serve children, however they may be limited in their comfort and expertise in caring for children. A primarily adult-serving hospice may feel more comfortable with an older adolescent than a toddler. Ultimately, this decision is up to the medical director and the clinical team of the hospice. It is very important to note that individuals up to 21 years old who are insured through Medicaid or Children’s Health Insurance Program (CHIP) are able to receive what’s called “concurrent care.” This is a special type of hospice where the patient can receive hospice care at the same time they’re receiving life-prolonging therapy, such as chemotherapy or blood transfusions. This contrasts with most adults, who must stop things meant only to prolong life when enrolling in hospice. Not all hospices are aware of this special carve out, so you may have to mention it if you’re pursuing this.

Similar to children, veterans qualify for concurrent care hospice. This is a special type of hospice where the patient can receive hospice care at the same time they’re receiving life-prolonging therapy, such as chemotherapy or blood transfusions. Not all hospices are aware of this special carve out, so you may have to mention it if you’re pursuing this. Your local Veterans Affairs hospital, especially if they have a palliative care or hospice team, can help you navigate this for you if you’re interested in concurrent care hospice.

Medical aid in dying (MAiD) or physician aid in dying is a carefully regulated option available to some people living with a very serious, life-limiting illness. It allows a patient, if they meet specific legal and medical requirements, to receive a prescription that will end their life in a peaceful way, at a time they decide. This is legally, morally, and ethically distinct from euthanasia. The same term, medical aid in dying, is used in Canada but describes a very different practice from the United States. The intention of MAiD is not to shorten life for its own sake, but to reduce suffering and to give patients a sense of agency and comfort when facing the end of life. For many, simply knowing this choice exists can bring relief, even if they never use it. Like hospice and palliative care, MAiD is grounded in respect for dignity, compassion, and honoring the deeply personal ways people wish to approach the final chapter of their lives. MAiD is currently authorized in 11 states and the District of Columbia: California, Colorado, Delaware, Hawai'i, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, and Washington. PalliAtlas allows hospice agencies to share that they do or do not participate in MAiD, as participation by a particular clinician or agency is voluntary.

Some treatments are rarely continued in hospice because they are costly, complex, or don’t align with comfort-focused care. Examples include total parenteral nutrition (TPN), continuous tube feeding, dialysis, or ventilator support. Others, like BiPAP or CPAP, may be continued if they clearly help with comfort. Most hospices will not do intravenous medications at home, but some may be competent in doing continuous subcutaneous (under the skin) infusions of medications. Chemotherapy, immunotherapy, or radiation are only rarely offered in hospice, and then usually just for symptom relief (e.g., radiation for painful bone metastases). Dialysis is usually stopped upon enrollment in hospice except in rare circumstances where the kidney failure has nothing to do with the reason they’re on hospice. If there are specific treatments you want to keep, it’s best to ask each hospice agency directly what they can accommodate.

Yes. Medicare Star Ratings are one way to compare hospice programs. These ratings are derived from the CAHPS® surveys of families about their experience with the hospice after their loved one has died. The ratings go from 1 to 5 stars, with more stars meaning higher performance compared to other hospices. While not a complete picture, they can help families get a sense of quality and what others have experienced after choosing a hospice. The data on ratings is a little tricky, though. In the latest survey data from 2022, 50% of hospices had a four- or five-star rating, so there may not be much differentiating the agencies. Hospices can’t be rated on the Medicare website until they’ve had 75 survey responses, so smaller hospices doing a great job may be excluded. Family satisfaction may be different from patient satisfaction with the hospice care they received, but the survey is sent out after the patient has passed away so we may never hear their opinion. Medicare Star Ratings may differ from Google ratings, so comparing the two could be helpful. So, if ratings are important to you, take it into account along with many other factors.

While there are some parts of the country that have no hospice coverage, it’s uncommon to encounter that. If PalliAtlas shows there is no agency that has indicated they cover your area, we recommend you reach out to the nearest listed agency to ask them directly. Sometimes hospice agencies can flex in terms of their coverage area, but this is highly variable and would be considered case-by-case. Another option is to seek out the nearest hospital with a palliative care service. They may be able to help in your situation.

Hospice doesn’t just go away after your loved one has died. They are required to provide ongoing bereavement and grief support for loved ones for up to 13 months after the patient has passed away. This usually takes the form of letters, information about grief, and periodic check ins, but occasionally rises to the level of individual counseling or community grief counseling referrals for those who need it.